C. diff, an infectious disease can be deadly for many – but especially those with compromised immune systems. We speak with a member of the Patients Rising team about their run-ins with the disease and learn how you can best protect yourself. And...
C. diff, an infectious disease can be deadly for many – but especially those with compromised immune systems. We speak with a member of the Patients Rising team about their run-ins with the disease and learn how you can best protect yourself.
And Terry and Bob dive into the healthcare news of the week, including an article written by Bob himself with a timely metaphor for moving medicine forward.
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
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Once they looked you know it was kind of that worst fear confirmed they were like you know if you had gotten in the hospital three hours later, we don't think you would be here your septic you are fully septic from this.
Levi Peterson describes a life threatening infection that just keeps coming back with a vengeance. We will tell you about their story and how you can protect yourself up next. Welcome to the patients rising podcast. I'm your host Terry Wilcox, CEO of Patient Rising. I'm joined by my co host, who is disappointed who is disappointed he lost out on Sports Illustrated Swimsuit cover to the 81 year old Martha Stewart. He's Bob Goldberg, co founder of the Center for medicine in the public interest. Bob, I know you got really close But shouldn't I be the one who's disappointed?
You made my day Terry, thank you very much. I am disappointed too. Although it wasn't a total loss. I did receive a slightly used Martha Stewart collection, forecourt. enameled cast iron round dutch oven as a consolation prize, and I get to audition as a stunt double for the dolphins at SeaWorld. So not not a total loss.
Not a total loss. It sounds like. Okay.
No, not at all. So, at the risk of being punny, let's wave goodbye to the ocean and my dreams of being on the cover of Sports Illustrated, which I know disappoint you more than it disappoints me, but that's okay. We have a full show today on latest health policy news and patient stories and deadly issue in particular.
Well, and today we have a very special guest who is part of our team here at patients rising. Levi Peterson is a resource coordinator at the patient helpline here at patients rising. They're also a patient advocate who lives with Behcet's, idiopathic intracranial hypertension and Parkinson's.
Levi joins us today to talk about C diff. And it is a life threatening infection that wreaks havoc on the intestines, especially for folks who are older, have a weakened immune system or have had a recent stay in the hospital. And right now we're doing a campaign around this at patients rising because it is so concerning for folks in the chronic disease community. And here's Levi story.
Basically, for me, it was actually the second or third time I had dealt with a C Diff infection because as many people know, once you have it at one point in your life, which I had, when I was very young, you run the risk of catching it again. And it can be absolutely brutal. Each time it happens. And for me, it was actually at the part of my illness where I was starting to deal with the Behcet's disease, which can very much mimic Crohn's and Ulcerative Colitis. So when you're dealing with a condition like that, it's very easy to fall into C Diff very, very well. And for me, I had no idea I even had C Diff at the time, I thought I was just dealing with a stomach flare. Something was different this time where I just felt sick. And there's no other way to really describe it other than I was in full societies. So I had literal water and swelling like in my stomach area, to a point where I could barely move. I had to actually bend my knees up to brace around my stomach because of how much pain I was in.
That just sounds terrible.
Yeah, and it is deadly. Yeah, a friend of mines wife in Israel, contracted C diff. Not in the hospital, actually. But you know, one of the complications is sepsis, which we know is quite deadly. And the magnitude is pretty wide. It's half a million cases a year in the US, but 30,000 deaths each year just from C Diff alone. And 75% of those infections are acquired in the hospital. So it's a problem that isn't going away. We've made some progress in reducing the incidence, but there's still a lot more to do. In fact, you know, Levi, and before she got sick, he was previously an EMT. saw just how frightening this can be in a hospital setting.
I had a lot of opportunities to work inside of the hospital. So I got to see how a lot of things in the hospital would go especially with a C Diff infection because it is literally on everyone's mind. Everyone is absolutely terrified of it happening especially when you're dealing with older patients, people that are on antibiotics, so think penicillin, clindamycin things of that nature. cephalosporins so when we're you know, especially in the autoimmune community when you're dealing with the illnesses like that where you know, maybe due to a flare or any myriad of things, you find yourself on antibiotics, you know, the possibility of going into an infection is just that much more.
This matters to our audience because one, Levi is a patient just like all of us, but to, for those with weakened immune systems or older patients, this can be a scary, scary thing.
Pretty much anything that would cause you to have a weakened immune system. So HIV AIDS, cancer, just someone being elderly, or even just taking any sort of drug that is suppressing the immune system. So I would also say definitely any type of inflammatory bowel disease having chronic kidney disease undergoing any gastrointestinal procedure, even colonoscopy, this is very important. colonoscopies, especially if you are someone who is older, and you are getting a colonoscopy go on probiotics, because that is one way that you can protect yourself just a little bit, especially if God forbid, you are on an antibiotic.
And since this is something that can return again, and again, it's just another added stressor on Levi,
For me, the disease ended up actually colonizing, like in my intestines, to where it's just laying dormant, ready to pop off at anytime. So pretty much I have to kind of look over my shoulder, every single time I do anything, you know, healthcare related, whether it you know, is taking a simple antibiotic, or you know, God forbid I had the flu or contracted COVID or anything, you know, taking a medication of any type that's going to, you know, suppress my immunity. I know I'm running the risk of potentially being septic, again, being back in the hospital. And the worst thing is, the last place you want to be with this type of infection is the hospital because the longer you're at the hospital, the more of a chance you're going to have an infection anyway.
Yeah, we haven't really talked a lot about infectious diseases usually talk about chronic, non communicable diseases. But I'm glad we're doing the segment. So you know, there's lots of studies showing it affects your quality of life, the risk of readmission and recurrence is great. I know that from my friend Yale's experience with it, and in her case, she survived, but she was pregnant with twins and unfortunately lost them. So the complications are incalculable. So we should follow a Levi's advice about making sure that your prep before you do any kind of procedure, especially if you've had it before, and don't use overuse hand sanitizer. As a matter of fact, a friend of mine who's a surgeon said if you one thing you should tell your audience, don't overuse hand sanitizer. It could kill the good bacteria that can prevent C diff.
That's interesting. It doesn't kill C diff it can kill the things that prevent C diff. So the best thing to clean your hands with and this has been said all along, even though for the past several years, we've had hand sanitizer literally everywhere. Yeah, it's open water. That is really the most important way to clean your hands. That's the best way to clean your hands. And I mean, any surgeon or anyone who works in the hospital will tell you that there have been multiple studies that have highlighted the burden of C Diff infection on the patient's quality of life. I mean, you heard here with Levi today, some of Bob's stories. And there's also an international survey among more than 350,000 individuals. And that found that those who are currently undergoing treatment for C diff, or had in the past had much worse quality of life compared to those who had no history of the infection. So even when you're not in a, you know, you don't have the infection and you're not suffering from the infection. Just having had the infection is having an impact somehow on your quality of life. We can link to more of that in the show notes. And just this past April, the FDA approved a new treatment to prevent recurring C Diff infections, which might be of interest to many of you, especially anyone who spends a lot of has to spend a lot of time in the hospital or gets infusions or other things. There's a link to that in the show notes as well. If you would like some more information.
It's a fecal microbiota product. Oral pill, I won't go into too many details, but basically resets the microbiome of your gut to help stave off and produce a response against C. diff. There's also just recently the FDA announced a fast track designation for a compound called elemen 201, which also treats C diff.
So everyone you can take a look at those links in the show notes will link to what the FDA has approved and the things that we've talked about. And if you think it's something that's right for you, or you want to learn more about, I always say ask your doctor, we're not medical advice, or anything like that. But I want you to know, for those of you who have a history or might be at risk, thank you, Levi for coming on the show and sharing her story and using it to educate all of us. We have more on how to protect yourself from C. diff right on our website, and the link to that is in the show notes.
Tick tock, tick, tock, the patient's rising now we the patient's second annual fly-in is right around the corner and registration is about to close. I sure hope you registered to join us in DC and make your voice heard about important issues. Last year's first ever we the patient's flyin was an amazing opportunity to commune and make our voices heard. I have no doubt this year is going to be twice as special. The We the Patients flyin takes place in Washington DC on June 12. And June 13. The link to register is in the show notes Hurry up before it closes.
Terry, have you seen the new ad about PBMs? It's actually quite good and quite funny. And sometimes you and I talked about you know how difficult it is to get out of the weeds. This doesn't get into the weeds, this ad makes it crystal clear exactly what a PBM does, and how it affects patients. So here's a little preview of that.
Voice over from ad 11:33
I'm sorry, this medicine isn't covered by your insurance. Yeah, I decide which medicines you can get. Wait, you're not my doctor? That's right. I'm your insurance company's pharmacy benefit manager or PBM. And I don't make as much money off this one. Hope you feel better.
That says it.
It says everything i i And I was just like, wow, that's really perfect. And they got it right. On this particular campaign.
It's like, you know, having somebody in your mucus, there's a whole bunch of spin offs, we could think about having them in a medicine cabinet to having them in the doctor's office. Right. But it crystallizes very clearly, you know, the fact that they don't add value, they just add confusion.
Benefit managers are I mean, the whole term benefit managers and you know, we've done the work with, you know, focusing on the vision benefit managers, which do that in a different way. You know, you can't have that pair of eyeglasses, because we don't make as much money off that pair. It's all the same racket. So now that's a really smart campaign. Full disclosure, it's a smart campaign from pharma, though pharma did not sponsor this podcast, nor did they ask us to put it on, we just thought it was funny. If you want to watch the clip, we'll have a link in the show notes. And finally, today, Bob, you had a recent op ed published all about how we can value investments made in the chronic and rare disease space, tell us a little about it.
Very quickly, you know, we have this idea of a carbon footprint, and we have a social cost associated with a carbon footprint. And it's been a very powerful way of framing the debate about the value of investing in carbon mitigation and climate change. And I just think we need to reboot the way that we talk about value to ask the same kinds of questions and may come up with a healthcare footprint for medical innovation. Very simply, you know, how much would we pay to avoid another pandemic? And let's start framing the debate in those broader terms, not just in terms of the short term benefit to the payers, but the long term benefit not just to the people who are sick, but future generations that are healthy and can avoid that risk in the future. So it is linked to the show notes, and anyone wants to give me feedback. They know where to find me.
Well, thank you, Bob. And like he said, and you can read the full article as always in the show notes. Thank you for listening to today's episode of the patients rising podcast. Make sure you share this episode with fellow patient advocates and caregivers.
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We'll be right back here on Monday with another new episode. Until then, for Bob and everyone at patients rising. I'm Terry Wilcox, stay healthy.